This couple's 2 sons both have a rare fatal brain disease

This spring, Bekah and Danny Bowman's two sons were both diagnosed with late infantile-NCL, a form of Batten Disease. The rare neurodegenerative disorder is fatal and has no cure.

Titus, 5, and Ely, 2, of Orange County, California both face a dramatic decline in health before an early death. According to the Batten Disease Support and Research Association, the once energetic and healthy young boys will experience blindness, seizures, personality and behavioral changes, dementia, and the loss of motor skills.

The couple began to notice that Titus' speech was lagging when he was 2 years old. In February 2014, Titus was diagnosed with epilepsy after he began having seizures. However, the epilepsy didn't explain all of his symptoms. The couple was told by a psychologist that Titus likely had and intellectual disability. Bekah told PEOPLE:

"We just felt so off about that. It felt so wrong, because we'd see our kid who was very smart and very up-to-speed, with the exception of a little speech delay."

Then, on April 7, Titus was diagnosed with the deadly disease. It was beyond anything the couple had imagined. Bekah told PEOPLE:

"When we got the diagnosis, [Titus] was still talking, walking and eating. Within a month of diagnosis he lost all of those abilities. He's blind, he cannot walk anymore, he's in a wheelchair, he's eating through a GJ tube and he doesn't talk anymore. We're just trying to figure out how to communicate with our son."

Ely was more than ready to assume the position next to brother as well. :) finally got a smile from Titus for the first time since being home.